For Participants | CHANCE-2

If you received a letter in the mail from the Carolina Head and Neck Study, you may have some questions about why you were contacted and how your information will be collected and used.

Below are some Frequently Asked Questions (FAQ’s) about participation in the CHANCE-2 study.

Why are we contacting you? | Why am I important? | What is the difference between this study and a clinical trial? | What does it mean to participate? | Will I be paid to participate? | Where can I learn more about HPV? | Why the name CHANCE-2?

Why are we contacting you?
If you were asked to participate, it means that you were selected to represent men and women living in 46 counties in North Carolina.

By law, all newly diagnosed cancer cases are reported to the North Carolina Central Cancer Registry. The Registry can provide qualified researchers with some of this information as long as they let the person’s doctor know about the study first. We checked with your doctor before contacting you. Participation in this study is entirely voluntary, and you may choose not to participate.

Why is my information important?
The best way to learn what causes a disease is to study people who already have it. Although this research may not help you directly, your information may help identify some of the causes of head and neck cancers and determine which treatments are most effective. It is our hope that this information will reduce head and neck cancer occurrence and improve treatment and survival in future generations of men and women.

What is the difference between this study and a clinical trial?
Unlike a clinical trial, we will not ask you to take drugs or medicine of any kind and we will not treat your cancer. Your decision about participating will not change your relationship with your doctors, the treatment they recommend, or the medical care you receive.

If I consent to participate, what should I expect?
If you volunteer to participate in the CHANCE-2 study, we will ask you to:

Respond to a 30-minute interview over the telephone. During this interaction, one of our trained interviewers will ask you questions about your medical and oral health history, tobacco use, and drinking use.
Consent to us requesting medical records from all of the doctors who have seen you in regards to your head and neck cancer.
Consent to us requesting a sample of your stored tumor tissue from your surgery.

You will be paid $40 if you complete the survey, and another $30 if you provide consents for us to request copies of your medical records and tumor tissue.

We will not ask you to:

Travel to Chapel Hill.
Take any drugs or undergo any treatment.

How will I be paid for my participation?
We pay our participants with Visa prepaid gift cards. These cards can be used to purchase goods anywhere that Visa or MasterCard is accepted. Cards are sent to participants in the mail after they have completed our survey and/or granted consent for us to request medical records and tumor samples.

Please note that these cards will need to be activated by the cardholder. This can be done either online here or by calling the number listed on the card.

Where can I learn more about HPV?
The Centers for Disease Control and Prevention (CDC) have comprehensive websites about HPV and the connection between HPV and cancer.

Additionally, the National Cancer Institute has a comprehensive website about HPV and cancer.

Why is it called CHANCE-2?
The Carolina Head and Neck Cancer Study is currently in its second phase, hence the numeral 2 (CHANCE-2). The first phase of the Carolina Head and Neck Cancer Study (CHANCE) was carried out between 2002-2006. This study, too, recruited men and women with head and neck cancer living in the same 46 counties of North Carolina.